I matured early as a child. By ten, I had boobs and by eleven my period had arrived. Throughout my teens I never kept track of my menstrual cycles as some of my classmates did, it came when it came and usually lasted a week or two. I had the sense then to think what does it matter when you’re not having sex. When you are a kid, it doesn’t matter how infrequently you menstruate, it is a blessing when you don’t as who wants to deal with that? My blessing would later turn into a curse.
I got married young, eighteen to be precise, and in that first year of marriage when you are still finding your way, every missed cycle brought on a little anxiety, but I enjoyed the time that I did not have to think about that ‘time of the month.’ I mean, really, which young couple doesn’t like not having to deal with menstrual cycles? During those first few years of marriage, I would have maybe four or five periods a year.
I started realizing something was off by the second year. So I started to research what causes one to not have regular cycles. Twenty-one years ago, PCOS wasn’t talked about or widely known. My research led me to Stein-Levanthal Syndrome, which is now well known as PCOS – Polycystic Ovarian Syndrome. The many gynecologists I saw over the years would later confirm this diagnosis. My symptoms included amenorrhea (the absence of periods) followed by dysmenorrhea (periods lasting an excessive amount of time, often painful and quite heavy), hirsutism (excessive hair growth), and chronic anovulation (no eggs are released from the ovary) resulting in little follicles or cysts forming on the ovaries. On ultrasound images my ovaries would look like they were covered in pearls as several doctors have described it.
Many of the symptoms associated with PCOS is the result of high androgen levels in women. (Androgens are male hormones, including testosterone). Many women suffering from PCOS have high libidos as a result of this. This is often misunderstood by people and judged negatively. I also suffered terrible acne and depression. PCOS has such a lengthy list of symptoms and is thought to affect about 10-12% of women worldwide. I personally believe that number is much higher just based on the number of women I am personally acquainted with that suffer from it, friends and family alike. There are varying degrees of symptoms, and compared to some, mine were mild, and for others mine might be considered excessive.
As time went by, my husband and I never actively pursued trying to conceive, and as is our nature, we went with the flow and put it in God’s hands. Our motto was, ‘When it happens, it happens.’ That said, I began stocking up on pregnancy tests. Some months, I convinced myself I was pregnant, seeing signs and being symptomatic. Every negative test result left me devastated, in tears and depressed for days, sometimes weeks, sometimes months. Many days it took sheer fortitude to get up and go to work. All I wanted to do was curl up in a ball and go to sleep or die.
I felt horribly betrayed by my body. I felt unwomanly. I raged at God, why couldn’t I get pregnant? At times my despair was so great, I would imagine myself going into a permanent catatonic state and being admitted to a mental institution. (Don’t ask me why – it was just the madness). I would imagine ways of killing myself. I debated in my head, which would be the least disruptive to my husband and family? I would imagine my funeral and the thought of putting my nephews and nieces through that would often be the turning point for me.
My husband was my rock, my strength and through those maddening moments and times of despair, his love and support never wavered. He knew when and how to get me down from my emotional precipice most of the time, but even he has suffered the wrath of my pain.
I would be filled with rage every time someone I knew got pregnant, particularly when it was an unplanned pregnancy. Going to baby showers was torture. There was a time when I was completely surrounded by pregnant women, and each and every day was a struggle in living. I could never let any of these emotions show to anyone outside of our relationship. What would they think of me? Even though I would love and adore their babies, it further fueled that sense of betrayal and anger I felt for myself. What was wrong with me? I loathed myself in those days.
Because insulin resistance causes PCOS and sugar isn’t processed properly in my body, all I did was gain weight. Add to that unhealthy eating habits fueled by a lack of nutritional education, or maybe I just didn’t want to know, or whatever it was, I ate very unhealthily. Most people who gain weight can usually lose it by going on a simple diet and doing some exercise. A person who has PCOS has to work twice as hard as a normal person to lose the weight.
Eventually I was bleeding more than I was used to – sometimes for up to three months, followed by a month or two reprieve only to start again. My doctors put me on birth control pills to attempt to regulate my menstrual cycle, but it never worked. Name the pill I tried it! I had no fibroids, no enlarged cysts to talk about, nothing. I’d try to lose weight, lose a little, but it never would fully go away. It’s hard to exercise when you’re constantly bleeding, when any activity that required exertion would result in a gushy flow that resembled Niagara Falls, destroying clothing, sheets, and leading to all sorts of embarrassing situations. I resorted to buying feminine products in bulk at Sam’s Club or BJ’s. I would wear super tampons, plus one or two super maxi pads for backup. I always wore black!
This became my life. Bleeding, small break, bleeding. When I was finally admitted to the hospital for a blood transfusion (I got four pints of blood), the doctors were amazed that I was functioning. I had about half the blood a human needs to live. It was the one time I was grateful that I was obese as it probably saved my life. No thin person could have survived, or so I tell myself.
I would go on to have a pulmonary embolism during this hospital stay (that story here https://goldenrox.com/2014/02/10/10th-anniversary-being-alive-part-i/ ). About a year after that ordeal, my hubby and I decided to get serious about getting pregnant. We visited an infertility specialist, who upon a very short exam and hearing my medical history, took one look at me and said, ‘Come back after you lose one hundred pounds and then I MIGHT be able to help you.’
We walked out of the office and I had a mini-meltdown in the parking lot. Again, my hubby was my strength. I truly don’t know if I would have survived till now if not for him and the amazing husband and support he’s been for me through all these years.
I joined a program at Gold’s Gym and managed to lose thirty pounds. I still had no success at conception or regulating my cycles. My periods were no longer ‘periods’ – it was more like a lifestyle. I was bleeding about ten months out of the year by now, and because of the PE, the doctors all agreed that I should not be put on any hormones, even an IUD posed a health risk, as it would never be determined what caused the PE. (By this time I had a team of doctors – Hematologist, Pulmonologist, Gynecologist, Cardiologist, and Primary Care).
It was difficult to see pregnancy as an option when you can’t stop bleeding long enough to have a good romp in the sheets! It now became necessary for me to get weekly IV iron infusions at my hematologist’s. Every week, I was the youngest person sitting in a room full of chemo patients getting iron intravenously to combat my anemia.
When I turned thirty-one, I decided enough was enough. I had zero quality of life. I could never undergo hormonal treatments to start ovulating nor did I want to (I’m of the belief that it harms the egg, ergo the baby), and I wouldn’t do anything that would endanger the life of any child I would create. I decided I wanted a hysterectomy.
For the first time, and probably the only time in our entire relationship, my hubby did not support me. He wanted me to go try other things, but I felt I had tried enough. (I had tried diet changes, acupuncture, herbal remedies, Chinese medicine, and western medicine all to no avail). I stuck to my decision and went ahead with the surgery. I almost didn’t wake up. A nurse sat at my side for twelve hours post-op as I went in and out of consciousness, and desperate efforts to get my blood pressure up.
I broke his heart with my decision but he still took care of me. He gave me low molecular weight heparin (Lovenox) shots when I got home to ensure no post-op blood clots. He literally did everything for me and being so used to having his total support always, I couldn’t understand why he didn’t support me in this too, knowing full well how much I had suffered. What I failed to realize at the time, was how much he suffered right alongside me. Our relationship declined greatly for a few years following this decision, which now that I look back, I should have given him what he needed, even if it was just time to get used to the idea, as he’d always done for me.
But as they say, hindsight is 20/20. We’re in a good place now and that’s all that matters. I hope he’s forgiven me for taking away what he perceived as his chance to have a natural child, and I have stopped blaming him for his lack of support and compassion during that time, which I believed for a long time was why my sub-conscious didn’t want me to waken from the surgery.
We’ve considered adoption, which we haven’t completely ruled out yet, but for now, we like our life as it is. We’ve made our peace with being childless. We travel, and we intend to do a lot more of it. Our nieces and nephews are at the age or getting to the age where they’ll be starting their own families, and we’ll get great nephews and great-nieces to spoil. I no longer feel enraged when someone gets pregnant or has a baby, but I do feel a twinge of regret that it’s one experience I’ll never have – to feel a life grow inside me (even though the birthing part has always freaked me out).
Maybe this was the grand plan all along. My husband would have been the most amazing father, and we used to always joke that he’d be the stay at home dad while I worked and brought home the bacon because he’s far more of a nurturer than I am. While I should be grateful that he stuck with me through thick and thin, I sometimes wished he’d gone and found someone who could provide children and given him the life he deserves. I’ve told him so repeatedly. In his mind there’s no one else but me for him.
Now I remember the days of my early twenties, when I’d be so excited to take a pregnancy test, and be absolutely devastated after, the months of depression, the pain and physical illnesses I’ve endured and I’m grateful for it or I’d never be able to feel compassion for those with similar struggles.
Most days my heart is filled with love and peace, but since I still have my ovaries, I still suffer hormonal surges that can bring on depression. It is definitely not as bad as it used to be, not even close. I still suffer abdominal pains when a cyst on my ovary ruptures. I have excessive hair growth, which seems to be getting worse the older I get, seriously uggghh. Removing my uterus only took care of the one symptom. I’ve tried metformin to treat the PCOS but find that I’m intolerant (I get wicked leg and foot spasms and cramps). I am obese and I need to lose about a hundred and thirty pounds but I don’t hate my body or myself anymore. I feel great and I have the loving support of friends and family who still tell me I’m beautiful.
I love myself. It took me a long time to get there, but I do. I thank the good Lord that I’m not diabetic, nor do I have any heart issues, both of which are brought on by PCOS, or any other health ailments to speak of or be drug dependent. I am very fortunate and I am grateful for my experiences and the people who have supported me through all of my difficulties. Most importantly I thank the good Lord for giving me my husband, a good man, without whom, I might not be here today. I just hope I can be a fraction of the wife he deserves!
What all couples facing infertility need to know is, you are not alone. Don’t do as we did and hide your struggle. Just know who you can turn to for support during those challenging times. The heartache, the wanting, the waiting, the highs and lows. There’s a huge community of people in your situation, facing the same problems. There’s no reason not to reach out. We’d love to help.